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PaulBish

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Posts: 3
Reply with quote  #1 
I am interested in how people with similar experiences to me have dealt with the situation.

I have been diagnosed with an obstruction of the urinary outlet. After countless visits to the Urologist at my local hospital over the last 4 years, I still have no answers as to why this has happened to me. I have had all the standard tests done to rule out all the obvious causes. The Urologist keeps telling me that there is an underlying cause, but he simply doesn’t know what it is.

All I do know at present is that my bladder is unable to fully empty. Tends to retain the equivalent of a canned drink. This has caused a build up of bacteria which has embedded it self into the lining of my bladder. I suffer from frequent micro infections. I have been on alpha blocker medication for over 3 years now. It helps my bladder to cope with the strain bearing on it, but doesn’t stop it. For the last 12 months, I have been using an intermittent catheter 3 times a day to help fully drain my bladder. Since I have been using it, my urine has been coming out very thick and dark. It just seems to me that the more treatment I receive, the worse things seem to be getting. I have been treated for full infections about 4-5 times now. The Urologist has told me that if I keep getting infections, my treatment wont work and I will eventually have to have an operation.

I find the whole situation very frustrating. I can’t sit down and fully explain things with the Urologist, as he’s working against the clock. All he wants to know is what my symptoms are and then tells you what cause of action will be taken. From my own reading on bladder conditions, I know there is medications available which can help to reduce the risks of infection by disinfecting the bladder. I have never been offered them. Each time I am suffering from 1 of these micro infections, my pelvic area feels very sore and heavy. I am unable to walk briskly or run, which makes things difficult in my line of work. I tend to get a massive build up of cramp in the top of my legs and lower back, which makes it very difficult for me to fall asleep at night. My sleep is very poor. Its the lack of sleep which I find most difficult to cope with.
Firefly

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Posts: 42
Reply with quote  #2 
Hi PaulBish

I don't have any obstruction and can only comment based on my own problems with infection.

I think the medication you are referring to as a bladder disinfectant is Hiprex and you can buy that over the counter at the chemist. I take Hiprex and do find it quite good. If you problem with infection continues there are people that can help with that and if you email the BHUK Office they can let you have their names as we can't post names on the forums.
PaulBish

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Posts: 3
Reply with quote  #3 
I thought Hiprex was only available on prescription. I have read about it. What has caught my attention is a vaccine called Uromune.
ModeratorKate

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Posts: 1,776
Reply with quote  #4 
Hello PaulBish
Welcome to our  Forum and hope you will discover ,much to assist you,unfortunately we are all so different, there is no 'Fix all' as what suits one unforunately can have no help for others, what we do have is plenty of understanding and suggestions that may help.
Also as Firefly suggested to contact BHUK and if possible become a Member, as you will have access to so much more advice.

Here are a couple of links that may helps 1st re Uromune

http://cobf.websitetoolbox.com/post/vacine-for-uti-7900865?pid=1300101823&highlight=uromune

and then do READ through the BIOFILM section on here, re specialists .

http://cobf.websitetoolbox.com/post/getting-a-referral-to-professor-ml-8385254?trail=15#2

There is also a SEARCH section at the top of the Page.

Do keep posting and ask as much as you want, as I said we will ALWAYS listen
Kind regrads
Kate


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Firefly

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Posts: 42
Reply with quote  #5 
I have also had Uromune - it worked quite well while I was taking it.
Loobyloo

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Posts: 9
Reply with quote  #6 
hiprex could be useful. however, alkaline foods/drinks will render it useless.  take with 1000mg of Vitamin C and something like cranberry pills as this makes the urine acidic and activates the formaldehyde.  you can ask your gp/consultant for this.  cannot understand why this drug is not more well known and readily available.
PaulBish

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Posts: 3
Reply with quote  #7 
Update on my bladder condition.

Back in 2012, before my regular visits to the urologist began, my GP had diagnosed me as having a polyp close to the bladder. Tests had concluded that the polyp wasn't causing a problem, so was deemed not of concern. Moving forward to March 2018, the urologist finally concluded that the polyp could be contributing to my condition. Was explained to me that polyps are known to cause muscle spasms, which could make it difficult to maintain a steady urine stream/flow. So, on the 2nd of March I had surgery to remove the polyp. It was scraped out, along with an additional 2 polyps which were found during the procedure. The tissue that was removed, was sent off for a biopsy. The result of the biopsy revealed that I had acidic cystitis which had contributed to constant chronic cystitis. Bacteria has embedded into the lining of the bladder and that is beginning to cause the formation of polyps. Which means that though the polyps have been removed, the cause remains. So the polyps will return.

Since the polyps have been removed, I have found that my straining to urinate has gone, along with the muscle cramps I had in my legs and lower back. I feel better in my self. My bladder is still retaining the equivalent of a canned drink. I still need to use a self intermittent catheter 3 times a day to drain that off, along with alpha blocker meditcation. The only advice the urologist has offered me so far is to drink plenty of fresh water to help keep my bladder flushed, which is something i’ve been doing all along.

I have been reading up on how to help the bladder lining to heal. I have changed my diet. I have cut right back on processed food. Have increased the amount of fresh vegetables, particularly green vegetables and have cut out all meats apart from fish and chicken. I have also increased the amount of fermented food I eat (kefir, kombucha, sauerkraut, sourdough bread and unpasteurised cheese). My food bill is eye watering. I am using a teaspoon of sodium bicarbonate bp once a day, with breaks every so often. I’ve been adding bone broth to my hot drinks. I’ve tried slippery elm bark, marshmallow root, goldenseal root, serrapeptase, d-mannose and cherry juice. When I look over what I have been taking, I can’t help thinking that it can’t be good to be taking all that.

Out of my experience so far, I have formed a very low opinion of the urologist and my local hospital. My urology appointments are getting further and further apart because the hospital keeps changing my appointments. They seem to be more focused on getting you in and out the door as quickly as possible. My treatment is far from finished and it doesn't fill me with confidence for the future.
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This Forum is provided by Bladder Health UK and is intended as a place for Sufferers of Interstitial Cystitis, Bacterial Cystitis and Over Active Bladder, together with their family & friends to gather, online in a positive exchange.

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